Private Dr

[lifegems]

I was diagnosed with PA about a year ago, since then I have had real hit and miss help from my DRs surgery with very little understanding of my symptoms or whats needed to treat the PA. to the point now where i am thinking of going to a specialist who really knows about PA as I am so fed up with feeling tired. I am also really concerned that my treatment is just not right. I am now SI with Hydroxy.. I take iron and folate supplements but im not sure its enough.. i woke up with double vision the other week and the Dr was oblivious and I didnt realise it could be connected and thats after a year of treatment which really concerns me. I am a member of the PA society and i read the posts on here etc all of which are helpful but i still feel out of control with no real understanding of whats needed for me to feel better.

I have had a colonoscopy and endoscopy which were all clear but i would love to feel that i had this under control and felt confident with the treatment, even if i have to self administer. if anyone knows of a good private specialist i would be grateful. Thank you in advance for any help.

[wedgewood]

Seven hours on , and I see that no one has replied to you . So I will . I was very desperate at one time and would loved to have found a specialist , but as far as I know , there isn't one .I tried very hard , and went to no end of trouble . I'm afraid that PA is the poor relation in the medical world . There is no interest in it in general . So many people have to look after themselves .Are you self-injecting often enough? I can only suggest trying that . You do know that there is no danger At all. ( I inject weekly .) I have heard on this site, of people who inject daily . You haven't mentioned folate/folic acid . You need plenty to work with B12 . I'm sorry that I can't be more helpful.Best wishes to you .

[lifegems in reply to wedgewood]

Thanks for taking the time to reply.. I probably don't si enough but I get acne as a side effect so it puts me off 😩 But I will try more .. I take 400mg of folate/folic acid and 200mg of iron each day .. again don't like the side effects !

[Foggyme Administrator in reply to lifegems]

Hi lifegems. Just a quick couple of comments...

200mg of iron daily is a high dose if you don't have iron deficiency anaemia...too much iron can be as bad - or worse - than too little iron). Has your GP checked your ferritin levels? Good idea to ask them to do so.

Folic Acid - you say you're taking 400mg - did you mean 400mcg? Some people take 400mcg as a maintenance dose - but some don't need to take any at all. Again, good idea to get your GP to check your folate levels periodically (especially if you're on any other medications - some can impede the absorption of folate). Over supplementation with folic acid can also cause unpleasant side effects.

Here's a link about that:

mayoclinic.org/folatesafety

If you're taking methyl folate (much hype about this on the Internet and very few people need it) suggest you stop this and take folic acid instead (if your folate levels are found to be low). Methyl folate can give quite nasty side effects and some people with specific gene variations should not take it all.

Acne - an unfortunate side effect that some people get following B12 injections - but for many, it does settle down eventually 😀.

A PA specialist - of how we all wish - unfortunately it's a bit hit and miss - a gastrologist should be expected to be knowledgeable (the one I saw wasn't). Just wondering, did you see a gastrologist when you had your endoscopy? If,you have so to used gastric issues, your GP may like to refer you to one.

Also - if you have any neurological symptoms, good idea to ask for a referral to a neurologist (Neuro symptoms have many causes other than B12 so ruling out other potential causes always advisable - and some neurologists (but not all) are quite good at B12 issues - so,another potential avenue for getting help.

Don't know if you take any other vitamins, but take care with vitamin B6 - over supplementation can cause neurological damage.

And a last thought - has you GP checked your vitamin D levels? Quite common to suffer with vitamin D deficiency when your have B12 deficiency (due to,absorption issues)... And it can make you feel very ill 😖.

Hope someone spots your post and is able to private message you with details of a special specialist (I.e. Someone who know's their PA business 😄).

Oh, and...about the double vision - have you seen an optician...or if it persists, ask your GP to refer you to an opthamologist (same if you have persistent blurred vision)

Post again if you need any more help.

Good luck and take care 👍

P.s. have you read the PAS pinned posts to the right of this page (or at the bottom if using a phone). Lots of information about PA and the B12 deficiency it causes. Good for getting ideas about how to help your GP to help you (but how sad/bad we have to do that) 😬